The purpose of this blog is to let anyone who is interested learn about my journey battling acute lymphoblastic leukemia. This journey started in February of 2012 when a routine blood test came back with some very low white and red blood cell counts. Finally, in very late May of 2012 I received the shocking diagnosis of acute lymphoblastic leukemia. In fact, I was feeling fine. Even the day of my bone marrow test which ultimately lead to my diagnosis I had the test at 9am, then played a rehearsal two hours away, then played a late concert, returning home after 1am.
My story will be told via my posting of the email updates that my husband, Greg, sent to friends and family. I am so blessed to be able to say that I feel absolutely fantastic now, just praying the cancer stays away. My hope is that if you, or someone you love is going through a similar battle this blog might, in some way, help you.
Pat Zuber
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May 29, 2012, at 9:53 PM,
Dear all,
We got up today and started making phone calls to doctors. David Hirsch, a family friend, got us some names to call at Memorial Sloan Kettering. Unfortunately, due to the holiday weekend, we didn’t immediately reach anyone there.
My hematologist paved the way for a consultation with a well known oncologist at Hackensack Medical Center. We arrived there and they immediately did some blood work. It started feeling like time was of the essence because I had a very high fever. This was followed by a one hour consultation. He confirmed that I have b cell acute lymphocytic leukemia. There is a possibility that I also have something called Philadelphia positive chromosomes which is common in adults with ALL. That won’t be known for a couple of days and could make the treatment a bit more complicated.
I decided to go ahead and get admitted at Hackensack Medical Center and am under the care of Dr. Stuart Goldberg. I am scheduled to have a bit more blood work and a cat scan tonight and then will likely begin receiving chemotherapy intravenously tomorrow. After 5-7 days, most of my bad cells will be knocked out and I get to go home! The second week my bone marrow cells will be recovering and I come in for checkups three days MWF. The third week I have a greatly recovered immune system and I get to live pretty normally. I have to repeat this cycle eight times over six months.
Now the fever is under control with Tylenol and antibiotics and we’re just waiting for a CT scan.
Love,
P
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Date: May 30, 2012 9:56:26 PM EDT
Day 2 at the hospital. Who thinks this is a good idea? The first thing a doctor tells you when you’re sick is eat well and get some rest. But if they take you for a cat scan at 2am and do other tests throughout the night, Your roommate makes noise in her sleep while her tv is on and the nurses come in to check one of you every hour, how are you supposed to sleep? That was mostly my first night at the hospital.
Day 2 was filled with more blood drawn, the installation of a picc in my left upper arm (basically the equivalent of a two way beer tap to get fluids in and out of me without having to stick a new needle in me), a heart scan, moving to my actual room in the cancer ward, and finally, the start of my first chemotherapy medicine (HyperCVAD – MTX/ARA-C for all of you oncologists!).
I’ve been assured that the side effects are normally minimal, not like most people think from past lore, so that’s hopeful.
Greg was here most of the day. Jessica, and Greg’s mom Elenor, arrived around 4:30. Victoria got here from her internship in NYC around 6:30. The four of them went to dinner and came back to my room for a visit. We were loud and rambunctious so it’s a good thing they didn’t kick me out of the hospital. But that’s really, in the end, the best medicine.
Love,
P
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Day 3:
Ok, so everything isn’t completely terrible. I’ve been told I have the best room on the
floor. It is a corner room and here is the view:
After being constantly hooked up to all manner of liquids I am feeling a bit like a hot water bottle that is slowly expanding. I’ve had two rounds of the chemo dripped into me with a third coming tonight. So far, no side effects or significant discomfort, thank goodness!
I was feeling blobby after a couple of stressful days with limited mobility. When I mentioned this to one of the nurses she led me over to a room with two stationary bikes in it. To Greg’s surprise and amazement, I was riding away when he called me this morning. He’s always trying to get me out on a bike with him but some how it never happens, haha!
My roommate left today and It looks like I get the room to myself tonight, a treat!
Lastly, thanks to everyone for all of the support, notes, phone calls, food at the house, and especially love and concern.
Love,
P
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Date: June 3, 2012 2:04:15 PM EDT
Subject: Pat Update 6/3
June 3: Greg writing for Pat
June 3: Greg writing for Pat
Pat is doing well and everything is going fine. Her spirits are good and she’s not experiencing any side effects from the chemo. She has finished her first chemo treatments. Her last Chemo for this cycle was a ‘push’ treatment rather than a drip, actually manually injected into her ‘picc’ line by a nurse over a half an hour at 2 am this morning. Now she gets about 2 weeks off from the treatments. We were surprised to learn that the chemo medication is actually a derivative of mustard gas! One thing for which to be grateful for World War 1!
We discovered an outdoor terrace she is allowed to sit out on and yesterday we spent a half hour outside in the sun which was nice and uplifting. They have a stationary bike which she is riding on for around a half hour 2x a day. Also a good amount of walking around the nurses station and standing and walking in place in her room. Got her a netflix account so she can watch things in her room on her computer.
We were hoping she would be coming home today but her doctor says her counts are too low and she must stay in the hospital, probably another week, but possibly as long as a month, so that they can continue to monitor her closely. That sounds discouraging but actually is just due to the chemo working so well killing cells left and right that her white and red blood cells, in addition to (hopefully) the cancer cells, have decreased a lot. They want to keep a close eye on her throughout this first treatment cycle to make sure everything regenerates properly and doesn’t leave her at risk of infection. She got her first blood transfusion yesterday morning. It worked fine with no problems, side effects, or reactions. I’m encouraging her to watch old episodes of Dark Shadows to get in the spirit.
We are both overwhelmed with the outpouring of support from friends, family, and colleagues. We’ve received tons of emails, phone calls, and volunteers to help with every imaginable chore and provision of meals. It’s too much for me to ever properly express the depth of my gratitude. Thanks to all!
Greg
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June 5:
Pat is home!
We got a surprise yesterday when one of Pats’ doctors came in and said she could probably go home! I drove to the hospital to visit and see what was up. When I arrived Pat was so tired that after catching each other up, she decided to nap. I sat in the room with her and while I was reading was able to fend off 4 different nurses wanting to take various pressures and temperatures, deliver lunch, and do other chores, so that she could actually sleep uninterruptedly for a couple of hours.
I left to pick up Jessie from school, which is relatively near the hospital. Shortly after we arrived back at the hospital, after a nurse taught us how to flush Pat’s picc line clean, she was set free.
Dorado was thrilled to see Mom (note tail action shot below!).
We don’t really understand what changed to allow this. Her blood numbers are not really any different from when she was told she would have to stay. In fact, they are expected to drop for a few days and hit ‘nadir’ about four days after the last chemo infusion before rebounding back into the normal range. I expect it might have something to do with the Lymphoma Conference that was in Chicago over the weekend which almost all of her doctors attended. Maybe no one was around to say it was alright for her to be discharged until Monday morning. Better caution than a mistake!
We both got our best night’s sleep in a week and a half. I, at least, feel sort of human again. It’s expected, with Pat’s red blood cells still declining for a couple of days that she will be tired and a bit weak until the turn around. Pat has office visits Wednesday and Friday where they will monitor her condition and start to formulate a measure of how effective this type of chemotherapy is on her version of leukemia.
We continue to be blessed by all the support of help with food, visits, phone calls, emails, and expressions of love and care from so many people, friends, family and colleagues, alike. Thank all of you. It’s not possible to express the value of this.
Love,
Greg
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Pat Update 6/11: The lioness returns to her den!
Monday June 11: I haven’t written lately as the pace of things has calmed down a bit with somewhat less new and shocking (to us) information flowing in. Pat feels well and still has no serious symptoms or side effects from either the disease or the treatment.
She had an outpatient checkup appointment last Friday and another one today. Everything is fine and proceeding as expected relative to the treatments. Friday she received her final chemotherapy medication for this cycle followed by some steroids. She now understands why no one believes Lance Armstrong when he says he didn’t dope to get all those Tour De France victories! She woke up the next morning at 5am, started on multiple loads of laundry, did the dishes, and completed basic medical research on the internet equivalent to the first year and a half of medical school, all before anyone else in the house had awakened! The nurse had warned her that the steroids often precipitated this kind of energizing high and cautioned her against cleaning the house from top to bottom. She feels that since she didn’t actually clean the entire house, she was, at least technically, still following directions.
The current plan remains to be home for the rest of this week and all of next week before beginning the next round (cycle 1B, she’s completed 1A) of treatment in the hospital. She has check-ups Mondays, Wednesdays, and Fridays to check the red and white cell and platelet levels in her blood. They are all very low at this point which is what is normal as a result of the chemotherapy. They are watching to see that her levels rebound back into the normal range sometime starting this coming Sunday to next Wednesday which is an important indicator of the effectiveness of the current treatment regimen. It will be normal if at one of these appointments they replenish her with a blood transfusion.
Pat decided to get a short haircut as a transition to probably losing her hair in the next week or so. Her regular stylist, Dee from Nu Moda here in Closter, was generous enough to make a house call and perform the operation on our back deck. Here are before and after shots. The before picture doesn’t really show much of a difference since Pat’s hair is up but is a good excuse to show Pat with Victoria and Jessica when we all were out to dinner after Victoria got back from her first year of college!
Pat with Victoria and Jessica; Pat with hair stylist Dee of Nu Moda
I’ve been preparing for the change by watching one of my favorite sci-fi shows, ‘Farscape,’ on netflix, which featured a hairless alien as one of the regular characters!
We continue to be well supported emotionally and well fed by the many friends dropping off fantastic meals. I can’t express how much of a help both of these are! Pat has been delighted by all of the emails, phone calls, and gestures and expressions of support she has received, so don’t hesitate to get in touch!
Love,
Greg
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Date: June 17, 2012 1:48:03 PM EDT
Pat Update: Sunday June 17
Last week was a relatively easy out-patient week with a bit of roller coaster ride and a bit of good news. Pat began the week coming off a steroid high. For her Monday appointment, she still felt relatively good but was dropping in energy. Before we left for the appointment, Pat, as per usual, put on make up and chose a cheery outfit. The doctor and nurses all commented on how great she looked and how well she seemed to be doing and let us go after only an hour, a really welcome short visit.
By the next day she was really dragging, with her blood cells in major decline (the less red blood cells you have, the less oxygen reaches your body parts, etc.) and on Wednesday, the next doctor visit, she had no energy and felt terrible. They gave her a blood transfusion along with a saline drip and a small amount of steroids to guard against a bad reaction to the new blood. She probably could have gotten this Monday if she hadn’t put on so much color in her face! Between a lot of waiting around, some disorganization in the outpatient office, and the time it takes for the transfusions, this visit took 7 1/2 hours! It’s so challenging to deal with the lack of control, certainty, or even predictability of the day to day appointments. While we’re always grateful for the care she receives, never knowing whether a visit will be 1 or 7 hours, sometimes being left to wait for a chair to open or a doctor to see you without any sense of whether you’ll wait 10 minutes or an 1 1/2 hours can be maddening. By the next day after the infusion, Pat felt enormously improved and has continued to strengthen. She has been tolerating some sores in her mouth that are waiting for a regeneration of white blood cells to heal.
Last night she complained of achy-ness which seems to be another facet we were warned of. Apparently, when your bone marrow starts making lots of replacement cells, your bones can actually ache from expanding to accommodate the new volume of cells! I knew she was a lot better this morning when I heard her in the kitchen opening and closing cabinets and drawers with a gusto that has been lacking of late!
One bit of important and very good news we got this week is that her oldest brother Bill (seventeen years her senior!) is a 100% match as a donor of either stem cells or bone marrow for Pat! While, so far, her type of illness does not lead inevitably to transplant, this makes transplant a more viable option as we go forward. Bill should be receiving the cryogenically sealed bubble that we ordered to keep him safe and isolated from the world any day now!
We were told that if Pat has the transplant and afterwards her blood DNA is checked, it will indicate she is a man! We also realized that this may be the opportunity to commit the perfect murder. All the evidence will point to brother Bill as the culprit! (concept copyrighted 2012 Greg Zuber). This idea may be my ticket – I’m thinking book, movie script, opera, illustrated novel, ipod/pad app, video game, licensed action figures…
Lastly, as we were warned, Pat began seriously loosing hair this week and decided on the bold move of shaving it all off. So now she’s sporting a clean summer look that fits in nicely on the Lower East Side, Williamsburg, or as our daughter Victoria pointed out, on the campus of her radical lefty liberal arts school, New College of Florida!
This week should be uneventful with outpatient visits MWF to monitor her increasing blood levels and, hopefully, no treatments or transfusions necessary. The only other planned activity is an appointment with an eminent doctor, Dan Douer, at Memorial Sloan Kettering in Manhattan who counts Pat’s type of leukemia as a specialty of his, for a second opinion.
Thanks again for all the love and support. It’s so meaningful to know that so many people are keeping Pat in their thoughts and prayers! More when there’s more to write!
Love,
Greg
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Date: June 30, 2012 10:49:23 AM EDT
Pat Update: Saturday June 30
Sorry it’s been a while since the last missive. There really hasn’t been so much to report. We’ve been in a bit of a holding pattern waiting for blood counts to rise, specifically Pat’s white blood cell count, as her platelets and red blood cell count have been at pretty good levels. Pat continues to feel quite well and is a lot less tired than she was.
The last week or so we’ve had a routine of going to the cancer center every other day, having some blood drawn and waiting for them to complete it’s analysis, waiting to see the doctor, seeing the doctor, hearing that everything is on track but that her white blood cell level is still too low, and going home. Usually 2 hours in and out which is not too bad in the scheme of things. Finally, on Wednesday her white cell count had gotten to .9, back from .1 right after the chemo treatments. With this, we were told it would surely continue to rise and that Pat could venture out a bit amongst the hoi polloi. We’ve taken advantage of this going out to eat a couple of times. One of Pat’s frist trips was out earring shopping! Also, Friday’s appointment was cancelled so we’re free until Monday afternoon!
Last Thursday we saw Dr. Dan Douer at Memorial Sloan Kettering Hospital for a consultation and second opinion. He is one of the most experienced and respected oncologists in the country with a lot of experience treating A.L.L. patients. We were gratified that, while differing in some details as to approaching the treatment, he was, for the most, in agreement and support of Dr. Goldberg’s (our doctor’s) approach. Douer made suggestions as to a couple of procedures that he would perform on a different schedule than Goldberg had planned. When we reported this back to our doctor he agreed with one of the changes right away but had a completely cogent and convincing argument for why waiting to do this was more beneficial. In the end, we are confident in Dr. Goldberg’s abilities and experience and reassured in staying with him.
On another note, the Tour de France begins today! Woooooo!!! Allez! Allez! Allez! Allez! Allez! Allez! Allez!
Love,
Greg
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Date: July 2, 2012 11:34:51 PM EDT
Pat Mini Update: Monday July 2
This is just to let you know that while we went to today’s appointment expecting all kinds of high tech invasive uncomfortable jabbing and extractive kinds of procedures to take place, Pat’s white blood count, while still creeping upwards and doing fine, has not yet attained a sufficiently pervasive level as to allow the afore mentioned tests which have now been rescheduled for Friday. So you needn’t write me asking what happened with the tests as nothing has happened.
If it makes you feel any better, Jessie (daughter number 2), who is taking a two week survey class on nano technology at her high school, today used one of their three electron microscopes to look at each of a blade of grass, a lotus leaf, and a rose petal to discern the physical properties of each on the molecular level relative to its hydrophobic properties (the grass absorbs water while the rose petal and lotus leaf each do not). These insights are now being used to make hydrophobic fabrics that imitate the same molecular structures and properties she observed i.e. rain gear, bike shirts.
Speaking of bikes, Swiss rider Fabian Cancellara won the opening time trial of the Tour de France with a time 7 seconds faster than the next best rider. Unbelievable!
More soon. Love,
Greg
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Update: Monday July 9
Last Thursday we had an informative, interesting, and in many ways encouraging consult with the transplant doctor. She said that should Pat choose to have a stem cell/bone marrow transplant, there are many positive factors in her favor, the fact that she has a 100% match with a sibling, her level of fitness is huge, her positive attitude, and all the support she has in dealing with this. It seems that surviving the transplant and surviving the cancer are actually two separate, if related issues
Friday Pat’s white blood cell count was finally high enough and she had both a bone marrow extraction for the molecular analysis and a spinal tap to remove some spinal fluid and also inject chemo into the spinal canal to take out any blast cells that may have migrated into there. The spinal fluid analysis will tell if this is the case although there’s no evidence of this yet. Both procedures went well without complication and, despite how much Pat hates being stuck with needles, without any real difficulty. It did leave her back a bit sore.
We’re took advantage of her current recovery and had a few friends over yesterday to celebrate a day early. Tomorrow she is scheduled to be admitted to the hospital again and begin the second cycle (1B) of treatment.
It’s been hot hot hot! So stay cool.
Love,
Greg
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Date: July 14, 2012 12:05:30 PM EDT
Update: Saturday July 14
Last Friday, July 6, Pat had two diagnostic procedures. The doctor withdrew some bone marrow for a flow cytography molecular residual disease analysis and also a spinal tap to remove cerebral spinal fluid to check for the presence of cancer cells spread to this region. While the spinal tap was in, he also injected some chemo drugs. The results from each of these tests was reassuring, the spinal tap indicated no spread of the leukemia to the brain. The preliminary look at the bone marrow showed no cancer cells present there either confirming the efficacy of the 1A treatment in getting rid of most of the blast cells. The one area of concern is that Pat’s blood cell counts have remained on the low side. Her doctor has noted this but says it is not unheard of in the first treatment cycle and seems not overly concerned.
We expected Pat to be readmitted to the hospital on Tuesday. We waited for a call from the hospital telling us they had a room but finally learned they were all booked up and didn’t have a bed available. We got a call the next day and she was admitted on Wednesday.
They began infusing fluids into her right away, followed by a 24 hour drip of methotrexate. This is quite toxic and requires an “antidote” medicine to make sure all of it leaves her system over the next few days. This finished dripping in at 4 am at which time a couple of nurses descended on Pat to work on her picc lines as one had stopped allowing return flow out of her vein. After the ‘liquid plumber’ was successful and the blockage was cleared, she began infusions of cytarabine which drips in over three hours and is administered every 12 hours over two days.
Unfortunately, Pat had a rough day after the methotrexate. It’s not clear how much is due to not tolerating this regimen as easily as the first and how much was from not sleeping for about 24 hours. She suffered from very dry mouth and throat (we were warned that the methotrexate can lead to mouth and throat sores), had a low grade headache, and nausea. Mouth and throat sores can be a problem until it’s out of her system. She has to avoid hot food as this increases the likelihood. I was able to bring her a homemade banana smoothie (love our vitamix blender!) which was her first food since her nausea began. Then she slept for about four hours while I fended off the nurses and aides as best as I could. She had a bit of dinner after waking and really pretty much completely rebounded!
We spent the evening reading some of Tina Fey’s “Bossypants” (thanks C. B.!) which sneaks up on you. One moment your reading goofy details of growing up in the 1970s and the next tears are rolling down your face! Really funny!
Pat is supposed to regain her freedom and come home tomorrow, Sunday.
Love,
Greg
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Subject: Short Pat Update: Monday, July 16
Date: July 17, 2012 2:16:53 AM ED
Pat was released from the hospital for time served and (mostly) good behavior on Sunday. This trip was a bit rough with some serious nausea and vomiting, not really eating much for the final two days, and both the standard hospital inflicted sleep deprivation with the addition of fatigue from some of the medicines. At the end of the first full day back home she’s already much improved.
Now we watch as her blood count numbers drop from the chemo and begin to rebound this coming weekend or by the beginning of next week. Pat has checkups Wednesday, Friday, and next Monday to check her counts and make sure they are behaving predictably. She’s scheduled for a blood infusion at the Wednesday appointment and will likely get platelets on Friday.
Meanwhile our nephew Peter Wolf will arrive tomorrow for a short visit, I teach a day of classes at Juilliard on Thursday, and Jessie heads off this Sunday for three weeks of camp at Brown University in Providence, Rhode Island . Busy, busy busy!
More soon,
Greg
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Update: Saturday, July 28
Streptococcus midas is the cause of this week’s frustrations. Last Monday night Pat developed a high fever and we have standing instructions to call the hospital if her temperature rises above 100.5. We were directed by the physician on call to go to the emergency room. We were kept in a cold, somewhat dirty, if private, room getting blood tests, antibiotics, a chest x-ray, and waiting for a room to be made ready, being attended to by a somewhat surly and only moderately communicative ER doctor until 4:45 AM. Then Pat was finally brought to a room on the cancer treatment floor.
Over the next three days, Pat suffered intermittent fevers seesawing from 100 to 102.8 This left her really wiped her causing body and head aches, with severe chills, and difficulty staying awake for any period of time. (Now she says she has a more intimate appreciation of what it must be like to have malaria!) Over these days she was given a whole bunch of different antibiotics before a blood culture finally indicated that she had a blood infection, the aforementioned streptococcus midas. This bacteria normally resides in our mouths. Last cycle’s chemo, methotrexate, apparently weakened Pat’s GI tract cells, since it takes out the fast growing cells of the lining. Bacteria which normally reside harmlessly in the mouth, can gain entry into the body’s bloodstream when this happens.
Once the culprit was identified, she was switched over to a course of the antibiotic Maxipime, known to be effective specifically against Streptococcus M. Streptococcus midas, called the king (midas) of strep bacterias due to the extreme fevers it causes, continues to cause fevers for days after it has been beaten by the Maxipime (sore loser!). By Friday Pat was feeling much better with only one descent into chills-ville and today (Saturday) she has felt very good, with only a low grade fever and even being able to get on the stationary bike that they have on her floor and exercise a bit.
Unfortunately, Pat’s picc line, the permanent port in her arm so that she doesn’t have to get stuck with a needle anytime she needs fluids in or out, was ordered removed by one of the infectious disease doctors overseeing her care. While the doctor was concerned that the line might be the source of the infection, we got the impression that once the bacteria was identified, several of the other doctors seemed not to agree with the necessity of this. She is scheduled to get a new picc line Monday right before she (hopefully) goes home.
For Medical Tech Geeks: Some good news was that we finally received the results of Pat’s Molecular Residual Disease test, measuring the percentage of cancerous cells in her extracted bone marrow fluid. The number was 2.9 x 10-2 % out of of 802,816 cells (802,816 * .00029 = 233) which we have been reassured is a low number of blast cells present after the 1A cycle, a positive indicator.
We had a fun surprise Friday night when a new nurse came on duty and introduced herself. She was chatting and eventually mentioned her daughter in high school at the Acadamies. It turns out her daughter is at Jessie’s high school in the same grade and also a theater arts major! Small world.
It was an unexpectedly rough week but hopefully she is through this and will be sprung Monday! Then we hope we will have the rest of the week at home before starting the 2A cycle of Hyper-CVAD chemo!
It was great seeing Wiggins, Sagan, Voeckler, and Van Garderen, the newest US cycling phenom, finish out the Tour de Fr in style! Who can believe the sprinting of Mark Cavendish!! Now on to the Olympics. (and what was with that opening ceremony anyway? How could they omit Benny Hill?!)
USA USA USA USA USA USA USA USA USA USA USA USA USA USA USA USA USA USA USA USA USA USA USA USA USA USA USA USA USA USA USA USA USA USA USA USA USA USA
Love, Greg
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Update: Thursday August 9 – Absorbed back into the Borg for round 2!
Pat is back in the hospital and plugged into the chemo dispenser.
After a hellish time in the hospital fighting off a bacterial infection for a week of high fevers, Pat had a great week and a half off from doctor visits and tests, at home. She felt quite excellent which is to say pretty much normal. That lone can seem miraculous when it’s fleeting! We were able to have some fun as a family, go out to dinner a few times, see a movie, and feel a bit like we normally do.
Pat is receiving round 2A of chemotherapy protocol of HYPER-CVAD (her third treatment for anyone counting) followed by a push of vincristine. Barring unexpected complications, she should be released to return home Sunday afternoon or evening, after which, her immune system will once again decline to nadir, followed by a rebound back to normal. This is all part of the winnowing down approach to cancer annihilation.
Upon checking in to the hospital, Pat found she was installed in a very small double room complete with a roommate who has already been there for three weeks!!, who is immobile and incontinent, moans, grunts, talks to herself, and stays up most of the night with her light on. In her defense, if you left me in this room for three weeks I would be exactly like her. Pretty disconcerting! When Pat finishes with all of this, she will have completed phase one of training for the SEAL Six program. Look out terrorists of the world! Pat’s hoping to change rooms tomorrow. At any rate, it’s just for a few days. We spent most of the afternoon and evening watching 30Rock on Netflix. An excellent way to pass the time!
Meanwhile, tomorrow I drive to Providence, RI to pick Jessie up from her three week camp at Brown University. She took a college level class in Social Psychology. Sunday Victoria flies to Sarasota, FL for training as an orientation leader for the incoming freshman at New College of Florida before beginning her sophomore year.
Feel free to keep Pat entertained with emails <Zuber.Flute@verizon.net> and phone calls (201) 572-3444.
Love,
Greg
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Subject: Pat Update: Thursday August 30
Date: August 30, 2012 3:18:12 AM EDT
We’ve had a very nice couple of weeks since Pat was last sprung from the joint. Her sister artist Liz Wolf arrived last Sunday and will stay with us for the next few months. She arrives in the nick of time, just as I prepare to get back to my normal but insane schedule at the Met, with sprinklings of Juilliard and other things here and there and Jessie girds herself to resume school for her junior year. Liz will keep the house from caving in, while also helping with Jessie’s travel to and from school, and, especially, keeping Pat company and her spirits up! Who knows she may even get a little New York influence and follow in the footsteps of so many other artists influenced by being out east, creating her own New World Symphony Sculpture in clay, an Ionization in Bronze, a Jazz Symphony in driftwood, the possibilities are endless!
Our nephew Peter Wolf has been with us this week as well. He was fantastic enough to volunteer to drive Liz’s car out here from Santa Fe, NM with her dog Emma. So the extended family has been pitching in in big ways! Emma’s mission is, of course to buck up Dorado, who has already responded with some superpuppy animation, belying his 9 or so years.
Pat goes in for the next chemo at the hospital tomorrow. This is cycle 2B and is Methotrexate. She had a bit of trouble tolerating this last time around and is planning on reporting the slightest hint of nausea or discomfort right away so that the nurses can give her medicine before any of it gets to critical mass! She should be allowed out to return home on Monday so at least it’s not too long of a stay.
This cycle is a bit notable for us as the decision has been made to go ahead with a stem cell transplant. This means that this is the last of these chemo cycles although not the last of the chemo. As of now the schedule has Pat’s brother Bill arriving around September 23 to begin various pre-donor activities and other heroic stuff leading up to having his bone marrow cells harvested. Pat enters the hospital about October 1st and receives full body irradiation twice a day for 4 days, followed by doses of Cytoxan and Methotrexate (more chemo!). On or about October 9th she will receive the transplant of new stem cells and begin a rebirth of sorts from there. She will likely be in the hospital about a month to protect her nascent immune system. I’ll write in more detail about the transplant as it gets closer but wanted to get the word out now.
But enough about Pat. It’s high time for a little bit of shameless promotion for me! I’ve been working hard for many months to put together a concert of music by composer/artist John Cage on his 100th birthday and the day is nigh. In case I haven’t yet flooded your inbox with unwanted e-flyers for this event, her it is! If you’re anywhere in the continental United States or Europe or Asia, (or even Canada!) I hope you’ll consider dropping by next Wednesday and joining us for this exciting program!
Love,
Greg
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Subject: Pat Update 9/3: Like the swallows of Capistrano…
Date: September 3, 2012 10:10:32 PM EDT
Things were quiet at the hospital as I arrived to pick up Pat and bring her home. The regular doctors were nowhere to be seen, the garage attendants were absent (free parking! ;^ ) ), and it seemed that, unusually, a greater number of beds were vacant than usual as if not enough people could make it in on Labor Day to attend to the normal number of cancer patients. Pat spread her wings and flew the (honestly this seems a bit thin, the whole Capistrano thing. But I couldn’t think of another metaphor so you’ll just have to work with me on this one!)
Pat survived this chemo round pretty easily, despite the same meds giving her very serious nausea last time around. “One never knows, do one!” She is home for about a month, only having the normal (how inappropriate it is to employ that word in any of this!) outpatient visits to check blood levels and provide any necessary infusions. Towards the end of the month her brother Bill will arrive for pre-harvesting pricking and prodding and she will begin pre-radiation-chemo-transplant pricking and prodding, but for now, let the party begin! (Probably only sporadic partying for me as I return to work tomorrow morning for the beginning of MET pre-season rehearsals.)
This is a photo of a new work in progress by Pat’s sister Liz. While it’s meant to be a marionette removing it’s strings, all I can see is Pat yanking the tubes out after a treatment!
{Don’t forget John Cage’s 100th B-day, Wednesday, September 5 @ 8pm @ Symphony Space, 95th and Broadway, New York, NY $25 or free if you need comps (let me know!)}
Love,
Greg
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Date: September 12, 2012 2:16:39 PM EDT
Update Wednesday 9/12: Who’s hot, who’s hot? She’s hot, she’s hot…
Just to keep you current, Pat began suffering some chills late Monday night. She developed a fever the next day. Perhaps she would have had this earlier but for the Tylenol she was already taking to calm some mouth sores after the last chemo. This is approximately the same number of days since her most recent chemo round 2B of methotrexate as the first time she got an infection after round 1B. She called the cancer center and was directed to go to the emergency room. I abandoned my Juilliard tasks of the day to meet her there.
I have to say that while the emergency room staff are clearly heroic, if you’re not actively hemorrhaging from the head, it can be difficult to get any immediate attention. The ER seems clearly staffed at the absolute minimum level necessary for dealing with some horrific event or number of small concurrent horrific events so that you can definitely be ignored when you have relatively minor needs like having to go to the bathroom when you are tethered to your bed by IV tubes that no one thought would be better mounted on a separate pole that is mobile so you could walk to the bathroom yourself because they were too distracted by all the people actively hemorrhaging from the head! Obviously, there are others who desperately need care at at that time, but it would be nice if there were a few more nurses aids or volunteers or someone to avoid the need for shouting out the door of your room that you have to go…NOW! At one point Pat’s fever reached 104.2. Really, pretty impressive in a dis-interested bystander sort of way. To be fair, at that point the ER staff did take notice.
This all started Monday night and it’s now Wednesday. We spent from about 1pm yesterday until 10pm in a small private room in the emergency room until they could move us to a large, clean, quiet, well attended room on the 8th floor which is the leukemia stem cell transplant floor, MUCH NICER. Pat’s fever is under control from tylenol as are the really profound bone shaking chills she was experiencing. As long as they stay on schedule with the Tylenol, that should be relatively fine. She is also experiencing pretty significant diarrhea at this time. We don’t know if this is from the antibiotics or the infection. While they’ve given her two different antibiotics, the long term plan is to maintain her until her white blood cell count, currently at .1, reaches 1.0, possibly by the end of the week and hopefully not later than the weekend. This should knock out any remaining bacteria. They will release her back into the wild at that point!
Love,
Greg
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Subject: Fwd: Pat Update Thursday 9/19: “I am altering the deal. Pray I don’t alter
it any further.” – D. Vader
Update Thursday 9/19:
Ok, this last week has sucked. But, after getting a fever a week ago Monday and being admitted to the hospital, Pat is finally outta there after 10 days of incarceration! Last week was difficult with spiking fevers, chills, and a stubbornly low white blood cell count (WBC) sitting at .1. Finally on Saturday the WBC rose to .2, Sunday .3, Monday .7, Tuesday 1.2, and Wednesday 2.3, and with the rising WBC coincided decreasing fevers and healing mouth and throat sores that had made eating painful. Finally they hinted at possible release, despite a lingering low grade fever.
Wednesday her doctor ordered a cat scan of her lungs just to be thorough before releasing her but discovered a low grade pneumonia. Then this morning everything seemed to go south. The attending doctor making early morning rounds said that a further reading of the cat scan films showed dark spots that indicated nodules. It was like Darth Vader saying “I am altering the deal. Pray I don’t alter it any further.” Panic ensued for us. Nodules in the lungs to someone who has any form of cancer is pretty terrifying.
Next a pulmonologist showed up to explain a scheduled bronchoscopy where they would stick a camera down Pat’s throat to make a visual inspection of the area as well as flush some salt water in to bring up cells with which to grow in a culture. He also intimated that it wasn’t certain that the spots on the film indicated masses but could rather be fluid or a number of other things.
Greg: Lord Vader, what about (Pat) and the Wookie?
Dr. Vader: They must never again leave this city.
Greg: [outraged] That was never a condition of our agreement, nor was giving Han to this bounty hunter!
Dr. Vader: Perhaps you think you’re being treated unfairly?
Greg: [after a pause; nervous tone] No.
Dr. Vader: Good. You know it would be unfortunate if I had to leave a garrison (of nurses) here.
Greg: This deal is getting worse all the time!
Finally, Pat’s oncologist arrived on his rounds and said that he absolutely didn’t think there was a mass or nodule of any kind indicated by the cat scan, and that the technical language suggesting the possibility of nodules was simply protocol. The bronchoscopy was intended to help determine the specific nature of the pneumonia as that might influence the approach necessary for the upcoming planned stem cell transplant.
Wow, talk about sweating right through all your clothes out of pure fear for no reason at all!
Pat had the bronchoscopy which went incredibly easily, showed no visible signs of anything wrong, and provided adequate samples for cultures.
In the area of priceless moments: Pat was given a sedative for the procedure, one of those ‘Count backwards from 20.’ “20, 19, 8ughhh…” Afterwards, the doctor fetched me from the waiting room back to Pat’s room. As I walked in, Pat looked up and said, groggily, “When do they start the bronchoscopy?”
A couple of hours more and Pat was home.
Imminent events: Friday Jessie and I fly to outside Los Angeles near Joshua Tree National Park for my brother Aaron’s wedding. Saturday Brother Bill arrives with his wife Kathy and will begin intermittent donor evaluation appointments and NYC tourism.
Sorry for the length of this but it’s been a bit epic around here.
Love,
Greg
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Update Monday 10/1: Reprieve
Pat’s brother Bill, AKA Super-brother, was in town last week with his wife, Kathi, AKA Kathi, to meet with doctors and be evaluated for the upcoming bone marrow stem cell transplant, for which he is donating the bone marrow. He passed all the tests, thank goodness. We couldn’t help worrying that he might develop all too understandable second thoughts about volunteering and try to get out it by substituting the saliva of a stray dog or cat for his own when they rechecked his DNA with a mouth swab test. Thankfully he held firm.
We tried our best to show him some good old NJ/NY hospitality. (No we didn’t get him mugged!) We did manage to get them tickets (with the help of a good friend) to Saturday Night Live and Turandot at the Met as well as a few days in a NY hotel. They also enjoyed a cruise in the Hudson River where they saw Obama’s helicopter taking off and a visit to MOMA. So they were able to have a good time around the various pokings, scannings, and proddings.
Previously, I mentioned that Pat was due to enter the hospital October 1 to begin the transplant procedure. Due to her infection and unexpected stay in the hospital, her transplant doctor pushed everything back two weeks to begin October 15. So she can enjoy a couple of weeks and just concentrate on being as strong and positive as possible when the next stage begins. The schedule, as of now, is:
Pat’s sister Liz is hanging in with us, providing fantastic help with everything about running the house and chauffeuring Jessie to school and various places when we’re not able to do so. I can’t express what a blessing this continues to be. Also, lots of friends as well as people in our community continue to help dropping off meals and offering all kinds of wonderful support!
Lastly, Aaron’s wedding was fantastic and he and his wife Libby looked great through the entire awesome day that they organized.
More when there is something to report.
Love,
Greg
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Update Sunday 10/14: Reprieve redux
Pat was scheduled to check into the hospital this Monday to begin the preparatory fun for her transplant a week later. Since she left the hospital with C. Diff (an infection primarily affecting her GI tract) and a cat scan showing mild pneumonia, her doctors are going forward cautiously as she can’t go through the radiation and chemo unless she is free of any infection.
A repeat of the cat scan earlier this week showed the pneumonia greatly reduced but still visible so her doctor has decided to push everything back a couple of weeks.
Pat will get another cat scan October 23rd. We will meet with the doctor again the 24th and, if the pneumonia has totally cleared, she will get an industrial sized tube put into her chest to input and output fluids the 25th, and she will begin the prep regimen the 26th. The actual harvest will be November 2nd.
While we are anxious to get going with the transplant so as to get finished with it all and get back to more normal lives without all the added encumbrance, we’re impressed with the care and intelligence of her transplant doctor and grateful for her excellent thoughtful approach. A recent flow cytometry test detected no cancer cells in the examined sample. Currently, Pat feels great and is doing her best to enjoy the “found time” with her sister, niece, and for the next week, our daughter Victoria who is home from college for a week for fall break.
Love,
Greg
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10/25, It’s Leukema-geddon! Twilight of the Blast Cells, Show down at B cell ALL Corral,
Thermo-Nuclear Blast Meltdown!
After two needed weeks off from everything to completely recover and regain her strength, post infections, Pat feels really great and has regained much of her normal unstoppable energy. She is officially in remission with the most recent flow cytometry test turning up zero blast (cancer) cells in her blood. Our daughter Victoria was home with us for a week long fall break visit from college. We were able to go out to dinner several times and Pat got to a few art galleries and MOMA with her sister Liz. She even has hair growing back in on her head!
So, now it’s time to time to end this and get back to everything we normally care about. Pat got the go ahead from her oncologist, along with the infectious disease doctor and pulmonologist, to begin the 6 day preparation to a bone marrow stem cell transplant. She will check in to the hospital tomorrow, Friday 10/26. Saturday begins two days of intense chemotherapy infusions of cytoxan. Each day’s dose will be greater than what she received over the four day treatments prior to this. This will be followed by total body irradiation, twice a day for four days. Either or both of these may lead to nausea, hair loss (again!), mouth sores, infections, and fatigue. The hair loss is pretty much a certainty but the other side effects are highly variable from one person to the next. The nausea can be greatly mitigated by anti-nausea medications now in use. Pat has been repeatedly told to get out of bed and walk as much as possible through all of the treatment and recovery. It’s been found that the more one is up and about, as opposed to lying in bed, the faster the generation of a new immune system happens. They have even put up a blackboard for the patients to record the number of laps (in miles!) around the nurses station each day.
The chemo and radiation serve the dual purposes of killing Pat’s immune system while also killing some of the few remaining cancer cells . This allows the infused bone marrow stem cells to grow into a new immune system without her old immune system being strong enough to attack the new cells. Once her new immune system is strong enough, it will attack the last remnants of the old immune system and, especially, any remaining cancer cells.
Pat’s brother Bill arrives Sunday 10/28 to attend his preliminary check-ups prior to the stem cell harvest which is on Thursday, November 1.
Friday November 2 is transplant day!
Going forward, Pat will receive antibiotics to guard against infections, and tiny doses of the chemo methotrexate each of November 3, 5, and 7 as well as immuno-suppresants to guard against any rejection of the new stem cells. She will be discharged from the hospital when her white blood cell count, as well as platelets and hemoglobin, return to sufficiently high levels. We’re hoping she will be home in time for Thanksgiving.
We continue to be the recipients of the most extraordinary gestures of support from friends, colleagues, and members of the community including many people we barely know and some we have never even met! Quite extraordinary and humbling.
Love,
Greg
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Update: Wednesday 10/30, Sandy, you bitch!
Monday night: Very dark out, as well as in, without electricity. Pat had an amazing view of storm Sandy from her 8th floor window. She saw one explosion after the next, presumably ac transformers going out in a blaze, and then watched the surrounding environs go dark. She had a good view, that is, until a maintenance worker came to her room, taped across her windows, and told her one of the hospital windows had broken from the storm and she should leave her shades pulled, just in case.
Then the power went out at the hospital. This was not a big deal, initially, as the backup generators kicked in providing hallway and room lighting and generally meeting minimal needs.
Tuesday: But today, the elevators at the hospital didn’t work (she’s on the eighth floor!), the food service could only provide sandwiches which the staff heroically handed up the stairs on trays by means of an 8 story human chain! Interestingly, in the visitor restrooms the automatic paper towel dispensers had emergency electricity while the lights did not. Many of the bathrooms had only a flashlight provided to meet ones needs. Fortunately, her room has a bathroom with a traditional faucet and sink, because the new fangled automatic motion sensor faucet didn’t make the grade for emergency electricity. After seeing all of the closed stores, ATM machines, and gas stations after a storm like this, it’s enough to make one think all of his was designed by the same people that gave us the digital paperless receipt free voting machine!
The only actually important impact on us from Sandy (we were fortunate with no flooding or damage to house or property) was that the radiation machine at the hospital could not be run on the backup generator. After being told today’s first treatment would be at noon, Pat learned neither scheduled treatments would happen. This was really upsetting as everything happening has been carefully planned in terms of timing and coordination of medications and the cell harvesting of her brother. Also, talking yourself into the idea that having all of this done to you is a good thing takes considerable psychic fortitude and once you are there any interruption can be really upsetting. Pat was upset. Her doctor sent word not to worry, that she was sure the power would be on by tomorrow and we would resume rather than start over or try something crazy (perspective is an amazing thing!).
Sister Liz, brother Bill, Jessica, and I spent the day keeping Pat company with pizza and salad. Jessica especially appreciated visiting since she could get internet service and recharge her phone and computer. She and I left Pat finally about 8:30 pm after too many episodes of “Friends”. At 9:55 Pat let me know the power was back on and tomorrow’s treatments would pick up where they left off. Jessica and I agreed that this had probably been the best “mischief night” (the night before halloween when the kids go out and toilet paper trees and houses) ever!
Wednesday 10/31: Cloudy but calm and even a minute or two of sunshine. We still have no electricity (phone, heat, refrigerator, hot water, internet!) but other than that we are fine at home. Driving to the hospital, I saw lots of uprooted trees including one enormous oak that had toppled directly onto a house crushing the second floor. So, all things considered, we are in pretty good shape.
The power is fully on at the hospital and everything has returned to normal there. Pat resumed her radiation treatments at 9 this morning with a second one scheduled for around 3pm. She is tolerating them very well with a minimum of nausea. The radiologist said that if she is not already feeling poorly, there’s no reason to expect things to get any worse. He also reassured her saying that there is no loss having skipped a day, that they have the option to treat every other day but most people prefer getting finished as soon as they can and prefer the daily plan. As of now, Pat will now get her last two radiation treatments Friday starting at 6 am to finish early enough to go ahead with the transplant infusion later that day.
Dr. Donato, Pat’s transplant doctor, dropped by the room for a celebrity drop in visit. She assured Pat that knowing the storm was coming, they already had plan B to skip a day if they lost power, and plan C to send her to another hospital for radiation treatments on schedule if power continued to be out. Nice to work with professionals!
Brother Bill goes in for the harvest on schedule tomorrow, Thursday, day -1. Friday is day zero!
Happy Halloween!
Greg
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Update: November 2, Transplant has begun!
Earlier today Pat had her last two radiation treatments. Tonight at 6:30 pm the IV drip bone marrow stem cell transplant began!
The doctor hanging the bone marrow bag.
2 Liters of Bone Marrow from a somewhat slimmer Brother Bill!
A toast to mark this milestone!
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Pat began receiving the immunosuppressant prograf (pro graft versus host disease medicine), prior to beginning the transplant. As it turns out, the prograf needs to be present in a fairly narrow dosage range, too little and it’s ineffective and too much and it causes severe nausea, diarrhea, and headaches. It’s understandable that at the start they err on the side of too much but Sunday was a drag. Once it was obvious that the prograf was too high and causing all of this, they temporarily stopped it to let things settle down. All the symptoms cleared around 7pm, miraculously, in what felt like just a few minutes and Pat felt completely fine. They follow the prograf levels with twice weekly blood tests and adjust it, like everything else she gets, as needed.
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Update: November 15, ‘American Horror story: Asylum’
She shuffled down the dimly lit hallway with the flickering
fluorescent lights, mask on to guard against any wayward aerial
germs, dragging her IV pole behind her like a ball and chain.
Continually dripping chemicals like leucovorin, neupogen, prograf,
methotrexate, various acidic solutions and who knows what
else into the port they had cut into her chest, the horror of
each seemed commensurate to the number of syllables in its name.
It was a bizarre and surreal setting with the nurses at their
stations making trivial and distracted conversation
in their barely identifiable foreign accents about shopping or
who found the best parking spot amidst the macabre gatherings of
family members huddled outside the rooms of their incarcerated
loved ones. The scene was not unlike one out of the tv show
‘American Horror story: Asylum.’ Who could actually think such
horror was entertainment! (JZ!)
“Must keep walking!” she thought to herself as she circumnavigated the Nurse’s station for the umpteenth time that day.
She knew the moment she stopped, the wardens of her captivity would descend on her to resume sucking fluids from her body, jabbing her with their long needles, forcing sensors and monitors into and onto her various orifices and appendages continuing, in general, the round the clock disturbances and sleep depriving interruptions that passed for “care” in this particular asylum. “What did you eat? Did you pee today?” their mocking chants.
She feared lying down. Once in bed they would return, the people that seemed to be, but weren’t, there. Ever since the minders put that opiate patch on her, the ‘visitors’ would come in her dreams. Or were they dreams? It was becoming impossible to tell which was reality and which were the figments of a shadowy world unseen and unheard by anyone else.
So raw and parched, if only she could drink without the agonizing pain that had become her throat since they burned her with the chemicals and radiation making eating a trial and swallowing the pills they required her to ingest a torture. The radiologist had such a pleasant demeanor and easy smile, talking about his imminent retirement, all the while pressing the button to unleash the devilish rays on her. Just another day at the office.
The Doctor stopped by on his rounds. He made his usual bland pleasantries, then taunting her with hints of release. “Maybe tomorrow” he said, or possibly the next day, she would be allowed to go home. But go home to what exactly? Not to freedom exactly, but a change of venue at least from her sterile captivity with the constant beeping of monitors and alarms that surveilled all of the inmates. Maybe tomorrow…
No matter, she would keep her hoard of hidden food and drink, ready for the next storm. “Maybe tomorrow…” She thought to herself “Must Keep walking!”
Actually, the current news is very much positive, I just thought it would be boring to read another bland list of the drugs Pat’s been receiving and chronicle of her recent daily routine. Pat’s doctor did stop by on his rounds today and did indicate that her white blood cell count had gone up from > 0.1 a few days ago to 0.1 yesterday to 0.2 today. Because of the exponential nature of the cell growth, he expects her to reach 1.0, the required level of protection for discharge soon, by tomorrow even, or, if not, certainly by the weekend at which point she will get discharged to go home! This is about a week and a half sooner than we had hoped for so it’s fantastic and hopeful progress. Her doctors and nurses (who are fantastic) have consistently remarked at how well she has been doing despite the negative symptoms so commonly result from both the chemo and radiation that she received. Of course both Pat and Bill have been type A over achievers their entire lives so, really, no one should be surprised at the success of her body with some his stem cells might have! Pat’s nurse case manager met with Pat, Liz, and myself to review the various medications, needs, and cautions in play once she is at home.
I’ll send out smoke symbols, hang a one lantern if by car, two if by van, possibly light up the sky with the Pat Symbol (like the Bat Symbol, Batman, get it?) or more likely send out another email when she actually gets home. As long as you’re not sick (or recently sick) you’re welcome to stop by for a visit if it’s convenient.
Love,
Greg
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Update: November 19, Home!
Pat is home!
Love,
Greg
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Update: November 22, Phase 3 and Happy Thanksgiving!
Phase 1: Diagnosis, the world turns upside down and inside out and the first of four rounds of chemotherapy begins
Phase 2: More chemo followed by radiation followed by a bone marrow stem cell transplant followed by the initial recovery while sequestered in the hospital
Pat was discharged from the hospital on the exact day that her treatment calendar listed as the first possible discharge date for transplant patients, the day that her doctor had told us to ignore as almost no one is ever ready to leave by then, She’s such a show-off!
Now we begin the third phase which is primarily about husbanding the growth of the new bone marrow cells and not getting sick while her immune system is simultaneously suppressed and recovering. This suppressed phase will last approximately 100 days from the the November 2-3 transplant to February 12.
During this time Pat will be at home with twice weekly visits to the cancer center. There they will take and check her blood and give her infusions of hemoglobin and/or platelets, as needed, until her new system (henceforth known as “little Bill,” Bill junior, Franken-Bill, Masterblaster Bill D. for Doppelgänger, I’ll figure it out!), grown from the infused bone marrow stem cells from her older brother Bill, is producing enough of these, as well as white blood cells, on it’s own.
She will be able to have visitors at home as long as they are not sick or even go to a friend’s home as long as they are not sick (her doctor ended the last visit with the admonition, ‘whatever you do, don’t get a cold!’ I’m thinking of having Pat shrink wrapped for extra protection!). She can go outside for walks but needs to avoid anyplace that is not a controlled environment, either from crowds of people or that risks exposing her to germs floating around in the air (no working in the garden, avoid active construction sites, etc.). She is supposed to limit her diet to anti-microbial foods that are thoroughly cooked. She is not allowed to pick up any dog poop in the yard.
She will also be taking a formidable range of medicines and supplements, some 13, daily in pill form, 1, 2, or 3 times a day, to help foster and maintain her developing system as well as provide protection from infection. These include Prograf, an immuno-suppresant to prevent graft versus host disease, Penicillin V Potassium to guard against infection, VFend to protect from fungal infections, Vancomycin Hydrochloride to ward off infections, Valtrex to deter viral infections, Bactrim to prevent bacterial infections, Folic Acid, a nutritional supplement, Pepcid to avoid stomach ulcer and heartburn, Ovral to stop loss of blood in menstrual cycles, Effexor to help against depression (ya think!), Ursodiol to gall(!!) gallbladder stones, Magnesium plus protein as a nutritional supplement, Lasix to to reduce fluid retention from the three weeks of IV infusions. She also has on hand Compazine to prevent nausea and vomiting, Ativan also for nausea and vomiting, Acetimeniphen for minor fevers, and a directive to use sunblock liberally. (Hot stock tip: There’s never been a better time to invest in Big Pharma!)
We wish you all a fantastic love filled Thanksgiving! We are celebrating here with lots to be thankful for, our daughter Victoria is home from college for a few days and, mostly, Pat is through so much of the treatment and getting stronger everyday.
Love,
Greg
This
-or-
Lentil and root vegetables stew! : ^)
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Update: 12/4 (Day 31), Chimera
Chi·me·ra also Chi·mae·ra (k-mîr
, k
-) n.
1. Greek Mythology A fire-breathing she-monster usually represented as a composite of a lion, goat, and serpent.
The Chimera was a monstrous beast which ravaged the countryside of Lycia in Anatolia and was to be able to breath fire.
2. An imaginary monster made up of grotesquely disparate parts.
3.a. An organism, organ, or part consisting of two or more tissues of different genetic composition, produced as a result of organ transplant, grafting, or genetic engineering.
b. A substance, such as an antibody, created from the proteins or genes of two different species.
4. An individual who has received a transplant of genetically and immunologically different tissue.
5. A fanciful mental illusion or fabrication.
illusion, dream, fantasy, delusion, spectre, snare, hallucination, figment, ignis fatuus, will-o’-the-wisp
Coursing through my veins
Chimera of selfless love
Cells stem certain doom
Joys, Gripes, Observations, Contradictions:
Waiting… On the stationary bike 🚴, will this 15 minutes never end? At the park with the dogs 🐅, a lingering dream from the captivity of the hospital room. Can’t wait to be able to swim 🏊 again. Feel nauseous, I wonder which pill 💊 is causing that? Feel better than I have in a long time 💪. Feel exhausted. Waiting…
Can’t get sick and 💖Jessica has a fever! 😷 Nothing tastes right, 🍉 when will my taste buds go back to normal? This salad tastes great. 🍴 This paella tastes great!!! Waiting…
For the 100th day! Can’t wait to feel like playing the flute again! 🎵 So fantastic to have so much support, love, food, emails 💌, friends, phone calls! When will my hair grow back?👶👩 Waiting…
Lost 15 lbs… : (😥 Lost 15 lbs. : ) ! 😊 Uncertainty and anxiety, hard to get to sleep. 💀 So tired, can’t stay awake. Beautiful day!🌈 Have to take a nap, now! 😴 Waiting…
Pat is doing great. Her doctors have forthrightly and excitedly remarked on how well she has tolerated the chemo and radiation as well as the transplant. Her blood numbers are all up according to today’s blood analysis with her white blood count at 5.9, platelets at 189, and hemoglobin at 8.8. She does sometimes have pretty significant fatigue as well as intermittent diarrhea and nausea (not necessarily simultaneously nor even related) that are variously the result of medications or recovering from radiation sickness or both or something else. She is waiting, for strength and stamina to return, taste buds to normalize, her digestive track to normalize, a bit of fog to lift from the old noggin, and, impatiently, to reach the 100th day when she will stop taking her imuno-suppressants and see how her new immune system takes control.
Pat was going to the cancer clinic for a blood test and meeting with the doctor twice a week after leaving the hospital. Because her numbers have come up so well and she has not had any serious complications, she has not needed to see the doctor after getting the blood test this week and is only scheduled to go to the clinic once next week for a blood test and a consult on the chimera test.
More immediately, as of day 30 the doctors are watching her blood for the presence of Cytomegalovirus (CMV). Most people are CMV carriers so it is not unlikely that it will turn up, they told us, sometime between days 30 and 60. If it is detected they will add a targeted medication for it to her regime. This medication is only recently available, apparently a product of aids research, without which, bone marrow stem cell transplant patients often used to develop life threatening pneumonia.
Next week Pat will have a chimera test. This test will confirm that the blood cells now being produced by her bone marrow are the result of the cells that grew from her transplanted brother Bill’s bone marrow stem cells, his DNA rather than hers. For the nerds and wonks out there, more info on Chimera testing can be found at: <http://www.seattlecca.org/Chimerism-Testing.cfm> .
Right now each day presents a strange mix of tedium and anxiety, energy and fatigue, the daily, and now routine, challenge of staying focussed on the positive and being positive. We had a fantastic diversion with the week long visit of our close friend Toni Lipton-Temple, retired über bassoonist and contra-bassoonist from the MET Orchestra now residing in Santa Fe, NM. She came out and stayed with us, helping out, and, especially, encouraging, and entertaining, and providing lots of great energy and happiness. She was a great excuse to have a few small social gatherings with close friends. We truly had a great time having her with us!
We continue to drown in and be buoyed up by the love, and concern, and generosity of friends and family!
Love,
Greg
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Update, 12/31: Day 58 and counting!
Well we survived the Mayan calendar and various potential weather calamities and are still here. Our holidays were and continue to be excellent with both daughters home and Elenor and Tom, my mother and step-father, staying with us.
Pat is doing extremely well. Her check-ups have been consistently positive, reduced to a once a week blood test often followed by seeing the nurse practitioner rather than a doctor. The last appointment the nurse proclaimed that she was ‘really cruising!’ The results of the first chimerism test (think Frankenstein’s sister), reported to us a couple of weeks ago, showed her blood’s DNA 100% matched with her brother’s, resulting entirely from the transplanted bone marrow stem cells, as good a result as we could hope for. At this point Pat has two sets of DNA, her original in her tissue and bone cells and Bill’s in her marrow and blood. If she had her blood tested it would read as from a male and if she were to commit a crime at which she just happened to bleed, it would be Bill that would have some questions to answer from the police. (Yes, I am already graphing and storyboarding the plot-lines for my first novel and film treatment in The Chimera Murders Series!© Look out Dexter) They’ve already run a second chimerism test from which we should get the results this week. Towards the end of January Pat will have some bone marrow extracted for a flow cytography molecular residual disease analysis to (hopefully) confirm that she remains in remission with no blast (cancer) cells present.
Pat’s energy, sense of taste, and appetite have steadily improved marching steadfastly towards normal. Her only real complaints are with her continued lack of hair (her doctor says this might not begin coming back in until the beginning of February but there are, just today, some peach-fuzzy hints appearing), sometimes slightly swollen ankles, feeling a bit more fatigued than usual, and the continued necessity for a wide regimen of pills taken several times a day. Pat has been enjoying walks in the park, visiting with friends, and occasionally eating out. Hopefully all of this will improve soon and at day 100 she can begin cutting out some of the pills.
I can’t say this has been a good year but through everything, Pat is still here, thanks to advancements in treatments over the last 20 years. The trauma of everything we’ve been faced with has forced us to be in and appreciate the moment with a greater clarity of focus than the normal pace of life generally encourages. And we’ve experienced the love and care of our family, friends, colleagues, and community to an extent I never imagined. We’ve gotten cards, food, and gifts from people we haven’t seen in years as well as complete strangers!
In Maureen Dowd’s recent New York Times Op-Ed article searching for some kind of response to the recent horrific shootings that tragically marred the holidays “Why, God?” Father Kevin O’Neil wrote the following as part of his experiences in dealing with life’s challenges. I’m not particularly religious but this resonates deeply with our experiences this year:
“One true thing is this: Faith is lived in family and community, and God is experienced in family and community. We need one another to be God’s presence. When my younger brother, Brian, died suddenly at 44 years old, I was asking “Why?” and I experienced family and friends as unconditional love in the flesh. They couldn’t explain why he died. Even if they could, it wouldn’t have brought him back. Yet the many ways that people reached out to me let me know that I was not alone. They really were the presence of God to me. They held me up to preach at Brian’s funeral. They consoled me as I tried to comfort others. Suffering isolates us. Loving presence brings us back, makes us belong.
A contemporary theologian has described mercy as “entering into the chaos of another.” Christmas is really a celebration of the mercy of God who entered the chaos of our world in the person of Jesus, mercy incarnate. I have never found it easy to be with people who suffer, to enter into the chaos of others. Yet, every time I have done so, it has been a gift to me, better than the wrapped and ribboned packages. I am pulled out of myself to be love’s presence to someone else, even as they are love’s presence to me.
I will never satisfactorily answer the question “Why?” because no matter what response I give, it will always fall short. What I do know is that an unconditionally loving presence soothes broken hearts, binds up wounds, and renews us in life. This is a gift that we can all give, particularly to the suffering. When this gift is given, God’s love is present and Christmas happens daily.”
I sat down thinking that I really didn’t have much to write about and now this has meandered on a bit too long. I’ll stop before I get weepy, preachy, or maudlin and try to return to my lovable acerbic wit next time.
But first, I want to thank everyone for their love and generosity and continued support, their embodiment of God in our lives.
Here’s to a better, easier, healthier, happier new year!
Love,
Greg
P.S. I was involved in two of the top 10 classical music performances of 2012 according to New York Magazine’s critic Justin Davidson! Here are my two. The second listing, number 5., was the September concert I produced as part of the New York Chamber Music Festival, ‘John Cage at 100.’ (Who cares what the other 8 were!!)
12/2/12 at 9:00 PM 1Comment
Justin Davidson’s Top 10 Classical Music Performances of 2012
By Justin Davidson
2. Thomas Adès’s The Tempest
Adès’s music whips from dense spasms to gossamer whispers—a perfect match for Shakespeare’s fantasy. The Met gave his opera a luxe production, with the superb Simon Keenlyside as Prospero.
5. “John Cage at 100”
Among the centennial bashes for the impish master of randomness was the New York Chamber Music Festival’s varied retrospective at Symphony Space. A highlight: their bewitching treatment of Cage’s organic-instruments pieceBranches.
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Update: Monday February 11, DAY 100!
We got lotsa snow over the weekend and Dorado was pretty happy bout it!
But the more significant event is that today was the 100th day since Pat received her bone marrow stem cell transplant!
Back in November this seemed excruciatingly far away but here it is. The 100th day after the transplant is a significant milestone, the span of time beyond which most of the possible negative complications resulting from the transplant are likely to occur, and also the time around which her immune system is developed enough to begin weaning her off the immuno-suppresant prograf.
All of Pat’s tests have been totally positive. She is in complete remission with no evidence of cancer from either the blood tests or the bone marrow tests. Chimerism tests indicate that the DNA of both her blood and bone marrow are 100% from the transplant.
Pat has been steadily increasing in strength, energy, and hair! While the road has not been a straight line of improvement, the overall trajectory has been consistently positive and her doctors have expressed only how pleased they are with her progress.
She is looking forward to going blond again ASAP (Note the 100th day celebratory necklace!).
Pat has suffered some digestive issues, the symptoms of a bit of host versus graft disease (HVGD), for which she has been taking the steroid prednisone. This is the same condition that someone with an organ transplant would be at risk from for the rest of their life necessitating a permanent regimen of immunosuppressants. With a bone marrow transplant, the risk of this will recede as the immune system gradually learns to recognize it’s body and stops attacking it. In any event, the HVGD is a positive and important development as the final offense against any remaining undetected cancer cells hiding somewhere. We want her new immune system to identify them as foreign entities and wipe them out. Pat will begin tapering off the immuno-suppresants after she has stopped taking prednisone and it is out of her system.
In the meantime, she has been practicing flute and getting together with friends to play duets, getting together with friends to have lunch, running the house, and chauffeuring Jessica to and from her school bus, to and from the mall, to and from just about everywhere.
Victoria turns 20 on Sunday!
That’s all there is to report for now.
Love,
Greg
allforpat 